A scary time...
Things arnt very good right now - both in my mind and phyiscally. After several months of a basically "normal" exsistance, Daniel had a BIG bleed on Saturday night. Michael & I entered his room at 11pm to find his sheets and him covered in blood.....i was thinking Varicies and Portal hypertension (for those who dont know, another complication of Daniels disease is Portal hypertension and this can cause little/large varicous veins in his stomach and they could bleed, it can be potentially fatal) anyway after the inital element of PANIC i rang Leeds who told me to take him to the nearest A & E Dept. We arrived at "Alder Hey" childrens hospital bloody sheet in hand and explained the circumstances, we only waited a short while and got seen by a paed. doc within minutes....she gave him a thorough exam and explained it appeared to be coming from his nose and although it is not fatal he should still of not bled so much and for so long. So, after taking blood and an alergic reaction to the cream "amitop" his labs returned pretty good! Only thing is, the one with the FBC (platelets and HB level) clotted in the vile and so we still had no result for that, his LFT's where good and although his INR (clotting) is a little high at 1.34 its still not terribly concerning. So, no answers there then. The doctor agreed to let us go at 3am as we had an appointment in leeds the day after (weird timing or what!).
Now the St James appointment, i went all prepared with questions to ask but really didnt need them as they mostly got answered during the consultation. We saw a different doctor this time, still a "Paed. Liver Specialist" but not one of our usual...his inital statement was "Daniel has only gained 40 grammes since Christmas" aghhhhhh, but then again i did know this and its been a BIG concern for some time now, and he has dropped on his little chart, however he had grown in height so the doctor put it down to "fussy 2 year old syndrome" rather than anything medical which made me feel slightly better and he put me in touch with the dietician who gave me some good ideas (more on that another time). Basically the news is not to good, his spleen is larger and is now 7cm palpable as opposed to the 5cm it has been for the last few visitis, this for those who dont know is not a good sign, it means Daniels liver has more scarring as it becomes harder and less able to allow the blood to flow through with ease it backs up through the portal vein into the spleen making it enlarge, a bigger spleen = worse PH. I also susspect his platelets to be low with this bleeding and this is also another issue with liver disease in general.
Now, today I am in a bad place.....there is alot going on in my head, I am waiting patiently for the other blood results that Leeds took, I have some other personal worries and i can feel myself slipping into that bad place where i once was and dont really want to go back.... I will update more when i get the results, oh and Thanks for caring enough to check in on us xx
Now the St James appointment, i went all prepared with questions to ask but really didnt need them as they mostly got answered during the consultation. We saw a different doctor this time, still a "Paed. Liver Specialist" but not one of our usual...his inital statement was "Daniel has only gained 40 grammes since Christmas" aghhhhhh, but then again i did know this and its been a BIG concern for some time now, and he has dropped on his little chart, however he had grown in height so the doctor put it down to "fussy 2 year old syndrome" rather than anything medical which made me feel slightly better and he put me in touch with the dietician who gave me some good ideas (more on that another time). Basically the news is not to good, his spleen is larger and is now 7cm palpable as opposed to the 5cm it has been for the last few visitis, this for those who dont know is not a good sign, it means Daniels liver has more scarring as it becomes harder and less able to allow the blood to flow through with ease it backs up through the portal vein into the spleen making it enlarge, a bigger spleen = worse PH. I also susspect his platelets to be low with this bleeding and this is also another issue with liver disease in general.
Now, today I am in a bad place.....there is alot going on in my head, I am waiting patiently for the other blood results that Leeds took, I have some other personal worries and i can feel myself slipping into that bad place where i once was and dont really want to go back.... I will update more when i get the results, oh and Thanks for caring enough to check in on us xx
posted by Liz at 10:06 am
2 Comments:
Liz, lots of love for you and Daniel. Sorry to hear his spleen's increasing in size. What hell it is waiting for results :-( I hope everything comes back good and that the big nosebleed was just an unlucky one off xxx
Liz and Michael,
You know I can appreciate where you are, having been there with Bethany. It may be a different liver disease but it has the same scary outcome with many of the same problems along the journey. You know where I am if you want to chat, one liver parent to another. Sending you big fat hugs and a kiss for Daniel and Olivia.
Sam
xxx
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